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Creating a Neutral Space, Pursuing a Common Mission

July 2019

John Barnes, Executive Director, Funders Concerned About AIDS

Grantmakers In Health asked about the challenges and opportunities currently facing Philanthropy Serving Organizations (PSOs), and in considering my response I found myself reflecting on the origins of Funders Concerned About AIDS (FCAA). We were founded in 1987, just 6 years into the epidemic, but when over 40,000 people had already died, and there was still complete inaction from the United States government. After losing too many colleagues, friends, and family, a group of grantmakers came together to form an organized response to the epidemic. That early work included outreach to fellow funders, urging them, no matter what they funded, to make AIDS part of that story.

Importantly, FCAA created a neutral space for funders; one where individual organizational agendas took a back seat to a unifying mission. This space became an incubator for philanthropic action. Not all funding organizations were equipped with the resources or capacity to respond to the HIV epidemic, but through FCAA, they could lend their voices to the greater call for action. Over time, they would also educate their own organizations and mobilize new funding to address the issue. Their effort succeeded beyond anyone’s wildest dreams: since FCAA’s founding, the philanthropic response to HIV has grown from just over $200,000 to over $600 million annually.

As the needs of our community changed, so did the ways FCAA pursued its mission. As awareness of the epidemic grew, and powerful advocates rose to the forefront, we refocused our energy and tools on building our first resource-tracking initiative – collecting and analyzing data on HIV-related philanthropy – to better inform the philanthropic response to HIV and AIDS.

Fast-forward a couple of decades—we’ve seen much progress but a divisive political climate has made fighting the epidemic exponentially more difficult. After the 2016 U.S. election, it was time for FCAA to pick up the mantle of our founders to loudly remind people of the critical challenges that HIV creates in the communities we serve. Unlike our early days, we now have robust data—and advocacy backed by data is compelling and difficult to ignore.

Our work in the U.S. South is an apt example. While accounting for just one-third of America’s overall population, the U.S. South is home to more than half of all new HIV diagnoses and 40 percent of all Americans living with an AIDS diagnosis. Despite this, the region receives barely a quarter of total HIV philanthropy disbursed within the U.S. each year. Structural systems and societal norms—including poverty, HIV stigma, racism, sexism, homophobia, and transphobia—pose significant obstacles to accessing treatment and support. Refusal to expand Medicaid in the region has further compounded the barriers to care for people living with and vulnerable to HIV. (For a portrait of what’s happening in the region, read New York Times Magazine June, 2017 article: America’s Hidden HIV Epidemic.)

Alarmed by this situation, FCAA turned to our resource-tracking report to identify possible solutions. We conducted a closer comparison of grants from key foundations active in the region, looking for any significant overlaps or gaps in the types of organizations being funded.

With this data, we began a much-needed conversation with and among five of the nation’s leading funders of HIV services and advocacy. Addressing the nature of the epidemic in the region would require reaching more deeply into its most impacted communities, and reprioritizing a collective approach. Harkening back to our early years as an incubator, we sought to form a collaborative of these funders that could coordinate and expand funding in the region. Out of this discussion, the Southern HIV Impact Fund was created and formally launched in December of 2017.

It’s important to note that the inaugural funding partners involved in this effort—Gilead Sciences, Ford Foundation, Elton John AIDS Foundation, ViiV Healthcare, and Johnson & Johnson—were already engaged and involved in the U.S. South. But this platform allowed them a mechanism to leverage their commitments in new ways. It enabled funders to invest in smaller organizations, including those with budgets under $500,000, or even without a history of philanthropic support, as well as organizations led by people of color or transgender leaders, with the trust of their respective communities.

The mission, vision, and goals of the fund intentionally focused on enabling partners to expand their reach in the South by incorporating organizations doing more intersectional work—including LGBTQ services, anti-criminalization, anti-poverty, and human rights—in addition to those focused on traditional HIV prevention, care, and advocacy. Our own outreach on behalf of the fund has mirrored this intersectionality. Funders for LGBTQ Issues has been a tremendous partner, offering guidance through its Out in the South Fund, and facilitating a plenary at its 2018 Funding Forward conference to discuss the impact of HIV on Black gay and bisexual men and transgender women in the South. It’s worth noting that this presentation led to the engagement of an anonymous new donor, without a history of HIV work, in the fund.

By selecting AIDS United – one of the nation’s leading intermediaries and funder of HIV services – to manage the fund, we were able to incorporate a participatory and trust-based grantmaking model, and offer detailed technical assistance to grantee partners. This includes a yearlong leadership cohort comprised of established and emerging grantee partner representatives to help cultivate the skills they need to grow and remain in the field. A portion of the fund’s resources are also reserved for Southern Action Grants, a responsive grantmaking mechanism that quickly provides funds to address emerging needs in the region—a tool that not many grantmakers are able to employ on their own.

The Southern HIV Impact Fund has been some of the most meaningful work of my now decade-long tenure at FCAA. And it’s work that fits easily into FCAA’s DNA—bringing philanthropic organizations together to raise awareness, mobilize resources, and drive progress even in the face of seemingly insurmountable challenges.